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JoJoZack Posted June 2012

My grandmother is in pain but the doctors can find nothing wrong with her.

my grandmother is 94, dementia, lives with my mom who is the sole care giver. Four days ago, she fell 6 times, screaming all day {this is a common thing} Next day, screaming she is in pain, mom takes her to Urgent care center, no broken bones, gave something for the pain, sent her home. This morning, grandma is screaming again she is in pain, has not wanted to eat for 2 days, fever, not urinating for 2 days, left hand, fingers are swollen and red, brought her to the ER..more xrays, no broken bones, no answer what the rash and blisters are from. At home, sleeps all the time, cannot form complete sentences, forgetfull. I think Hospice, hospital has no answers. It is become so hard for mom to care for her especially with the falls and not bathing and not eating. I dont know where to turn. Money is unfortunatly an issue, for any type of assisted living or nursing home. Just don't know where to turn at this point.

JoJoZack Jun 2012
I just cannot express how happy I am that I found this forum, so much wonderful information from everyone..THANK YOU.. I saw grandma today, no UTI..they believe the rash and blisters on her arm and hand are Cellulitus and are giving her antibiotics IV..the main reason she was sent to the er is because she was screaming all day that her arm hurt and her side hurt when she would take a breathe, I knew her arm and hand were swollen but thought that was just a result of falling so many times in one day on the same side. I thought maybe a fracture of some sort. But just turned out to be something so different. Hopefully it will clear up with the antibiotics. Time will tell. I did speak with the doc and nurse about talking with a social worker, will be doing that in the morning. one person did ask if the falling was a new condition, she has always been unsteady but worse within the past 2 weeks, along with more trouble getting in and out of bed and sitting up and in and out of a chair. I would say within the past 2 weeks so much of her has declined, she coughs so much after eating or drinking, makes less sense speaking, and remembers and knows less than before. (she completely forgot how to use a fork on thursday). During my visit today, I was told that she had no clue why she had tubes in her {cathater and IV} so she pulled them out. That was quickly taken care of by the wonderful nurses. But uncontrollable screaming all day and night {she's always screamed for one reason or another - her way of I guess having a voice but unable to find the words so she screams} - but she was just screaming "they arent doing anything for me" because she just cannot comprehend what they are doing, and this evening I got a call from the hospital because she became uncontrollable saying she had to go to the bathroom and they wouldnt let her {she has no concept of the cathater and what its purpouse is} but again, the nurses are wonderful and I we worked through that. I do feel soo bad for the nurses and other patients who have to hear her scream alll day and all night. She does take meds but I think the brain fights them. I can only hope to get her into some facility where they are experienced with dementia patients and can at least just keep her comfortable and injury free. This is something that my mom just cannot do anymore.
Again, I just want to thank everyone for the advise and help. This is a place where you dont have to feel so alone in what your going through and feel lost and helpless. Ive told my mom alot about this site and she will be joining, she sometimes thinks no one fully understands her situation, I told her there are more people out that than she thinks who can understand and are more than happy to share their experiences to help others. this is a site full of angels.

mrsribit Jun 2012
You need to talk to Grama's regular doctor. He can have her evaluated for hospice. When my mom was in the nursing home the doctor just wrote an order as he would have for medication or therapy. Within a day the hospice nurse came out and talked with her and gave the recomendation for hospice. In days she came home to a hospital bed in the location that we chose and a bath nurse comes out 3 times a week and an RN or LVN/LPN comes out 1-2 times a week or more if we need them. Mom is incontinent so her diapers and pads for the bed are covered as well as any medications related to comfort care and her diagnosis. This is all covered by medicare. I would assume that would be the case.
I would also like to suggest the possiblity of the rash/blisters MAYBE being shingles. I would suggest you go to:

this is a slideshow of shingles. This is a VERY painful viral infection of the sensory nerves. It's a result of having chicken pox. And it's contageous so if it looks similar then please talk to the doctor immediately.

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StayingMe Jun 2012
Have they actually done tests for UTI (Urinary tract infections)?
Is her falling a recent problem or has she been doing it for some time?
Does she have reduced functionality on her left side compared to normal?
Sorry for the questions but the overall judgement needs to be whether this is a progressive decline due to dementia or whether it is due to other influences such as UTI or even Stroke (full blown or TIAs).

jeannegibbs Jun 2012
Is Gramma likely to be kept in hospital until at least Monday?

Perhaps having her sent to a nursing home, either permanently or for rehab, is the best bet at this point. She can get hospice care there, if she qualifies. If she goes to a nursing home and she cannot afford it, no doubt she will need to apply for Medicaid immediately.

I think a good place to start, now that she is in the hospital, is to talk to the medical social worker there. That will help you understand the options available. Perhaps you and Mother could make an appointment to see the social worker tomorrow.

And, BTW, it really does sound like a uti. By why an ER couldn't figure that out is a mystery ... so maybe it isn't that, it spite of what it sounds like. Has she been specifically tested for that?

JoJoZack Jun 2012
thank you for replying... the rash is on her left upper arm going down to her fingers
her fingers are so swollen and little blister looking bumps on her fingers and really bad on her palm, some blisters up the arm also. {when she falls, she always falls to the left so originally I thought the pain was just from her falling but xrays show no types of breaks or fractures}. but she does say its very painfull. She has not been on any new medications, she has been on the same meds and dosages for well over a year. Grandma is not on hospice, my mom is her sole caregiver { I was until 3 years ago after she broke her hip and it became too much for me so my mom took over} now mom is just having such a hard time physically and mentally with being the sole caregiver - I start a full time job in 2 weeks so I wont be much help. She has been diagnosed with dementia for about 6 years now and within the past few weeks it has just become sooo much worse. She wont bathe, sleeps all the time, never wants to get out of bed, stopped going out a bit over a month ago, uses a walker but has recently started to forget about using it and my mom is getting hurt always picking granny up off the floor. Ive done alot of reading and I feel she is in the last stage of dementia and would like to explore hospice. I just have no clue how to begin or where to turn. Financially no one can afford private care, but Ive read that you can only go into hospice if the doctor says you have up to 6 months to live. Grandma was admitted to the hospital today {and screaming away when I left that she wanted to come home} thats something else I will have to figure out how to deal with, her not coming home. But I want to save my mom also because I cant watch her life going down hill being the caregiver, she just cant do it anymore. I just feel lost. I cannot get intouch with grandma's doctor till Monday either. Would the hospital be able to help with deciding if hospice is right?? I just honestly do not want grandma to go back home with mom.

mrsribit Jun 2012
Where are the rash and blisters? Does your grandmother have a good doctor? Is she on a new medication like an antibiotic? She may be having an alergic reaction. If so then this needs to be addressed immediately! It sounds like someone with experience with kidney's needs to look into this further. It sounds like among other things she has a urinary tract infection. UTI if untreated can look like worsening of dementia. With the swelling she may have had soft tissue damage.This can be helped with ice and elevation of the hand above the heart. Did you mean that Grandma is on hospice? If not then please ask for an evaluation for being admitted. Medicare should take care of the cost.

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